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May 22, 2010

A wake up call.

She woke around six this morning, screaming that she was hungry. This is not the kind of thing a kid on the ketogenic diet should be complaining about.

I didn't notice. I was dead to the world. Another kid screaming again? When in a sleepy state, I have developed the power to ignore anything beyond the realm of my bed-sheets. From within the sheets, however, I am completely vulnerable. Fawn's hand thrust out and jabbed me in the side. The meaning of the gesture was clear.

In a bleary-eyed state, I stumbled down the hall to Jade's bedroom. With any luck I would be able to bring her back to our bed and coax her back to sleep. Instead, I was subject to an hour of restless four-year-old feet launching themselves with force into my man-parts.

And how far we've all come since then! Jade's not seizure-free - she still has the occasional but very brief jerks in her sleep - but it's a remarkable improvement over how bad things had gotten. We're not out of the woods yet; there are other complications that we need to deal with, but her balance and coordination is improving incredibly quickly and her language skills, which had been markedly delayed, are still leaping ahead.

The whole thing has been hard on us, but now we're living our lives again. The epilepsy anchor is always there, but doesn't weigh us down quite like it used to.

Fawn wrote and recorded this song about a year ago.

I think Jade said it best this morning, as she was eating her breakfast when I told her that she started having seizures on this very morning two years ago. She nodded. looked at me reassuringly, and said, "I had broken wings, but I don't now. I have new arms. Flap! Flap!"